Patient Involvement In Health Care Research Articles

Patient and community engagement: the approach at university health network.

In the past few years, all of us in healthcare have heard phrases such as "patient engagement," "community engagement," "stakeholder engagement," "patient feedback," "community involvement," "patients as partners in care," "patient centred care," "patient experience" and "patient involvement in healthcare." These phrases (and many more that have not been identified) speak to a process whereby those people who have a legitimate and meaningful relationship with the healthcare organization and its providers should be involved in a meaningful discourse and set of transactions with the organization and the providers. If involvement doesn't happen naturally, then there is a sense that some sort of definitive outreach should occur that will engage and enroll meaningful involvement in a variety of ways.

Reflections on informed choice in resource-poor settings: The case of infant feeding counselling in PMTCT programmes in Tanzania

A growing emphasis on patient involvement in health care has brought ‘informed choice’ to the core of the debate on provider–patient interaction in global health-care programmes. How the principles of patient involvement and informed choice are implemented and experienced in diverging health systems and cultural contexts are issues of increasing interest. Infant feeding and infant feeding counselling of HIV-positive women have posed particular challenges related to choice. Based on ethnographic research conducted from 5 November 2008 to 5 August 2009 within prevention of mother-to-child transmission of HIV (PMTCT) programmes in two hospitals in rural and semi-urban Tanzania, this study explores nurse counsellors' and HIV-positive women's experiences of infant feeding counselling and patient choice. One of the hospitals (hospital A) promoted exclusive breastfeeding as the only infant feeding option, while the other hospital (hospital B) aimed to follow the Tanzanian PMTCT infant feeding guidelines of 2007 promoting patient choice in infant feeding methods. Women in hospital A expressed trust in the advice given and confidence in their own ability to practice exclusive breastfeeding, while women in hospital B expressed great uncertainty and confusion about how best to feed their infants. This paper reflects on the feasibility of a counselling procedure that promotes choice of infant feeding methods in PMTCT programmes in severely resource-poor settings where HIV-positive women have limited access to resources and to up-to-date knowledge on HIV and infant feeding outside the counselling room. We suggest that a universalistic procedure presenting the same unambiguous message on infant feeding to all women enrolled in the PMTCT programme in this and similar settings is likely to produce more confidence, less confusion and, hence, better results in terms of HIV-free survival of the baby.

Are patients shaping healthcare across Europe?

Patient involvement is the input of patients in healthcare, not just as research participants and recipients of services, but as partners. Examples of this include the setting of research agendas, project proposal development and the production of clinical guidelines. Patient involvement also includes carers and the public where appropriate. Eurobarometer’s Qualitative Study on Patient Involvement [1], the report of which was published in May 2012, was commissioned by the health directorate of the European Commission (DG SANCO) to investigate the views of patients and healthcare professionals on patient involvement in healthcare. The study was conducted across 15 countries and, in each country, five healthcare professionals and 10 patients were interviewed. The general findings from the study were that the term “patient involvement” was not well understood by either patients or professionals in most countries. However, patients with chronic conditions were more likely to understand the concept, as well as those who were younger and better educated. Both patients and professionals could see advantages to patient involvement in healthcare, essentially making patients more engaged and, therefore, responsible for their health and that of others. However, neither group could specifically …

Making information ‘relevant’: General Practitioner judgments and the production of patient involvement

Sociological work that has engaged with the issue of patient involvement in health care suggests it needs to be recognised that decision-making is not simply an individual cognitive act contained in a single consultation, but a process that is distributed across multiple encounters in relation to a range of agents and non-human actors. Drawing on such conceptualisations of decision-making, and based on semi-structured interviews with 24 General Practitioners (GPs) in the United Kingdom about the prescription of statins for the primary prevention of cardiovascular disease, this paper explores the preemptive work that GPs perform when attempting to achieve patient involvement in healthcare decisions. The paper identifies a set of repertoires through which they evaluate and coordinate often contradictory forms of knowledge, transforming them into information that they think is relevant to patients, and which will potentially facilitate meaningful involvement in healthcare decisions. The study concludes by suggesting that such fluid and context sensitive practices are a necessary strategy for navigating complex health environments, which can be justified and underpinned by a relational model of autonomy. However, work needs to be done to explore how such judgments can be calibrated to mesh with the decision-making preferences of patients and what new approaches and standards for practice this would require.

Muscle Invasive Bladder Cancer: Examining Survivor Burden and Unmet Needs

Although improvements in perioperative care have decreased surgical morbidity after radical cystectomy for muscle invasive bladder cancer, treatment side effects still have a negative impact on patient quality of life. We examined unmet patient needs along the illness trajectory. A total of 30 patients (26.7% women) treated with cystectomy and urinary diversion for muscle invasive bladder cancer participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network (BCAN) website between December 2011 and September 2012. Data were collected at individual interviews, which were audiotaped and transcribed. Transcribed data were quantitatively analyzed to explore key unmet needs. At diagnosis unmet informational needs were predominant, consisting of insufficient discussion of certain topics, including urinary diversion options and their side effects, self-care, the recovery process and medical insurance. Unmet psychological needs related to depression, and worries about changes in body image and sexual function were reported. Postoperative unmet needs revolved around medical needs (eg pain and bowel dysfunction) and instrumental needs (eg need of support for stomal appliances, catheters and incontinence). During survivorship (ie 6 to 72 months postoperatively) unmet needs centered around psychological support (ie depression, poor body image and sexual dysfunction) and instrumental support (eg difficulty adjusting to changes in daily living). Meeting patient needs is imperative to ensure adequate patient involvement in health care and enhance postoperative quality of life. An effective support provision plan should follow changes in patient needs.

Hear our voice

Founded half a century ago by a teacher upset at the way her husband was treated in hospital, the Patients Association has become a campaigning force, influencing attitudes to patient involvement in health care. Patients have more say today, but meaningful engagement in services is still uncommon.

Patient-centred quality care: An assessment of patient involvement

Background: There is limited research on patients' involvement in healthcare in Sub-Saharan Africa. Patients' involvement is important in improving health service delivery as well as health outcomes. Materials and Methods: A patients' involvement assessment was carried between September and November 2010 in 18 different health facilities using an interviewer administered checklist. The purpose was to assess patients' involvement from the provider perspective in HIV care hospitals and clinics with the aim of improving quality of care. A score ranging from zero to three was used to grade the different level of patient involvement at the health facilities. Results: Only 11% of the 18 different health facilities achieved the highest score of three, whereby consumer input is incorporated into setting quality goals and results of quality activities that are routinely communicated to patients and other consumers. The remaining 89% of the facilities had gaps with regard to patient involvement in health care. Conclusion: Majority of the facilities did not have structures that involve patients in quality improvement projects, advocacy and routinely communicating to patients and developing other patient centred quality activities. It is important to build sustainable and lasting partnerships for patients' involvement in health systems and health delivery. Patients' involvement should be placed as a fundamental priority in scaling up quality health services at the primary level.

Patient Involvement in Healthcare is Associated With Higher Rates of Surveillance for Hepatocellular Carcinoma

Surveillance for hepatocellular carcinoma (HCC) is recommended in patients with cirrhosis, but earlier studies suggest that it is used less than one-third of the time. Patient factors associated with surveillance rates are incompletely understood. The aims of our study were to determine HCC surveillance rates in a tertiary-care center and to identify patient predictors of receiving surveillance. Patients with Child A or B cirrhosis seen in the University of Michigan liver clinics between October 2008 and March 2009 were enrolled to complete a self-administered survey. Surveillance rates and clinical data were extracted from the patient electronic medical record. Of the 160 patients enrolled, 74.4% had HCC surveillance performed in the past year. On multivariate analysis, predictors of receiving surveillance included male sex (odds ratio 7.1, 95% confidence interval, 1.2-43.2) and patient involvement in their care (odds ratio 3.4, 95% confidence interval, 1.5-7.9). Patients expressed high levels of concern regarding HCC, desired more information from their physicians, and wanted to be more involved in their care. HCC surveillance rates in a tertiary-care center were significantly higher than earlier reported rates. Direct patient involvement in decisions regarding HCC surveillance may help to improve surveillance rates.

Protocol: developing a conceptual framework of patient mediated knowledge translation, systematic review using a realist approach

BackgroundPatient involvement in healthcare represents the means by which to achieve a healthcare system that is responsive to patient needs and values. Characterization and evaluation of strategies for involving patients in their healthcare may benefit from a knowledge translation (KT) approach. The purpose of this knowledge synthesis is to develop a conceptual framework for patient-mediated KT interventions.MethodsA preliminary conceptual framework for patient-mediated KT interventions was compiled to describe intended purpose, recipients, delivery context, intervention, and outcomes. A realist review will be conducted in consultation with stakeholders from the arthritis and cancer fields to explore how these interventions work, for whom, and in what contexts. To identify patient-mediated KT interventions in these fields, we will search MEDLINE, the Cochrane Library, and EMBASE from 1995 to 2010; scan references of all eligible studies; and examine five years of tables of contents for journals likely to publish quantitative or qualitative studies that focus on developing, implementing, or evaluating patient-mediated KT interventions. Screening and data collection will be performed independently by two individuals.ConclusionsThe conceptual framework of patient-mediated KT options and outcomes could be used by healthcare providers, managers, educationalists, patient advocates, and policy makers to guide program planning, service delivery, and quality improvement and by us and other researchers to evaluate existing interventions or develop new interventions. By raising awareness of options for involving patients in improving their own care, outcomes based on using a KT approach may lead to greater patient-centred care delivery and improved healthcare outcomes.

Factors influencing older patients’ participation in care: a review of the literature

Over the past 10 years, there has been an increase in the literature promoting patient involvement in health care at all levels of the decision-making process. To review the literature on factors influencing patient participation in care with a particular focus on the perspective of older people. Various search engines were used to conduct the review and articles were identified through the following databases; CINAHL, CSA ILLUMINA, Science Direct, Blackwell Synergy, the Cochrane Library, OVID, SAGE, AHMED, BNI and MEDLINE. Research studies ranging from 2000-2007 were selected for inclusion on the basis that they investigated patient participation and/or older peoples' involvement in health care. Seven key themes emerged from the literature: the concept of participation, the need for older people to be involved, autonomy and empowerment, patients' expectations, benefits of participation, factors influencing participation and precursors to participation. Although patient participation has received considerable attention in the literature, this review highlights the dearth of research from the perspective of older people. There is a general consensus that preference for participation should be assessed and not assumed, and the review offers a sobering reminder that participation should not be achieved at the expense of patient autonomy and choice. Quality care and the most productive use of resources are dependent on the public's engagement with health service providers. However, despite being central to contemporary nursing practice, this review suggests that the reality is not matched by the rhetoric. Future initiatives should focus on supporting nurses and other healthcare professionals to develop the competencies required to facilitate greater participation by older people who wish to become more involved in their care.

Exploring the role of patients in promoting safety: policy to practice

That receiving healthcare involves potential and actual risks is widely acknowledged by the public, health professionals and politicians. Ensuring the delivery of safe and effective care is a fundamental component of healthcare policy and underpins many activities undertaken by health professionals on a daily basis. Alongside an increased understanding of health care and its potential dangers, the public has expectations of greater involvement in decisions about the treatments and care they receive. These expectations have arisen from social changes in the past few decades as well as being a consequence of government policy promoting public and patient involvement in health care. Despite the priority given to patient safety and patient involvement in policy development, there has been little debate about the feasibility of patients contributing to their own safety. This article reviews some policy initiatives and explores the potential role of patients in promoting safety and the implications for practice.

Innovations online

Innovations online

Patient Involvement in Health Care: A Procedural Justice Viewpoint

creasing the involvement of patients with their physicians in determining their medical regimens. Speedling and Rose state, informed and empowered patients need to participate with their physicians in exploring options for overcoming disease and establishing the conditions for maximizing health consistent with their own sociocultural frame of reference.' Eracker and Politser echo this sentiment, As medical decisions become technically more complex and are associated with greater costs to the patient, physicians have been increasingly motivated to incorporate patient preferences in these critical decisions.2